HERRIMAN — Chris Jones has created all kinds of media presentations for clients, but his latest project is the most powerful and the most personal.
He is documenting his 10-year-old son’s final journey in this life.
“This was a little quiet thing for our family and friends to follow Mitchell’s journey,” Jones said. But the Facebook page Mitchell's Journey — filled with poignant reflections, photographs and meaningful videos — has attracted thousands of followers all over the world.
“Taking photos, our observations of him have really helped us as a family. It turned us from being victims to be more observers of this marvelous thing that was going on, even though it so difficult,” explained Jones, who has three other children.
He often writes the Facebook posts in the middle of the night when he can’t sleep. “It’s been good therapy,” he said.
His wife, Natalie, agrees. “It’s been amazing to feel love from everywhere. It really has lifted us up and made our burdens light.”
The Jones family first learned their son’s life would be limited when Mitchell was diagnosed with Duchenne muscular dystrophy at the age of 3. The muscle wasting disease usually results in progressive muscle deterioration and is fatal by late teens/early 20s. Mitchell was only 10 when doctors discovered over the summer that he had cardiomyopathy and the muscles in his heart were rapidly deteriorating.
By January, Mitchell's heart was barely functioning, and two weeks ago the decision was made to bring him home from the hospital so he could spend his final days surrounded by family and friends.
“We’ve not only had one more day, we’ve had many more days," his father said. "So there has been a strange potpourri of pain and anguish, hope and happiness.”
Mitchell has always had resolve and courage beyond his years. “He is a joy. He has the best sense of humor,” his mother said. Despite the numerous tests, procedures and hospitalizations, Mitchell rarely complains.
“He was engineered for this trial,” remarked his mother. She said he often reminds his family about the things that matter most. “He has this serious side, and he asks the serious questions,” she said.
Though Mitchell’s body is frail, his spirit remains strong. He loves spending time with his family and friends, and appreciates every sunset.
He is shy around strangers and was nervous to be interviewed. But he laughed when his mother talked about the good advice he gives to his siblings and nodded mischievously when asked if he was any good at video games.
The Jones family has counted many blessings and tender mercies along this journey. Chris Jones has written about many of these experiences on the Facebook page. In a video titled “Sweet Dreams,” Jones records the moment his son received a puppy from his grandparents — a gift that turned out to be medicine for his soul.
“The hospital would allow Mitchell to have puppy visitations, something they don’t normally allow,” Chris Jones explained. “We’d bring that puppy in, and Mitchell’s spirits were lifted. Believe it or not, it seemed like his vitals got a little better because he was so filled with hope and happiness because of this puppy.”
Mitchell’s best friend lives next door and is a frequent visitor. “His friend Luke has been such a blessing. They have both had difficulties in their life and have compensated for each other and been the best of friends,” his mother said. On Facebook, Mitchell's father wrote: “It’s as if their souls were woven from the same heavenly fabric.”
It’s the Joneses' ability to find light even in the darkest of places that has touched the hearts of many Facebook followers. “We’ve been really surprised to see how people responded to this story. They will write us and say, 'I never prayed before' or 'I didn’t believe in God, but now I do,'” said Chris Jones, scrolling through the long list of Facebook remarks that have come from almost every continent.
A man in Washington state told them on Facebook that he had struggled with prayer for years and now he is praying for Mitchell and the effects are spilling over onto him. “This practice of praying for your son, I find myself talking to God about other things that have really improved my life,” he wrote.
Besides sending prayers and words of encouragement, Facebook followers have taken action and last week delivered surprising news.
“One of the people following reached out to Parent Project Muscular Dystrophy. The CEO got on the phone with half of America’s surgeons that are qualified to do what we need to do and just called us on Friday and said, 'We can’t see this happen. We want to help.'”
If all goes according to plan, a surgical team in Columbus, Ohio, will insert a Left Ventricular Assist Device into Mitchell’s heart on Monday. It’s not a cure, but it will give him more time.
“We had agonized over (whether we) have we done all that we could. It would wake me up in the middle of the night," Chris Jones explained. "'Have I missed something?' And so this thing surfaces, and either way it is going to provide a way for him to live longer or satisfy that soulful question: Have we done all we could? So either outcome is a blessing.”
Chris said he never could have imagined the new path the Facebook page would create for his family.
“Mitchell shouldn’t be alive at this moment," he said, "and it is the combination of prayers and faith and now thousands of people that have altered the course of Mitchell’s life, whether that has given us a few more days or, with this new LVAD, possibly years.”
Beneath a picture of Mitchell, his mom and brother against a setting sun is the caption: “One day, in retrospect, the years of struggle will strike you as the most beautiful."
The Jones family is grateful they have already been blessed with faith and a perspective that allows them to treasure those moments now and enjoy every minute they have left with their precious son.
Copyright 2015, Deseret News Publishing Company